Apparent flare...

[Gladys911]

Regular hospital appointment a couple of weeks back; feeling fine; gave a blood sample (always difficult getting blood from me, so not a comfortable experience. Left feeling quite chirpy only to get a call from the rheumatologist to say my inflammation markers were high so I needed to get my GP practice to send in another. Call from rheumatologist today to say they had further increased so I need to up to 40 again (from 2) but to come down 5 a week, get another blood test in a week and appointment with him in 4 weeks. A bit disappointing but there are worse things to deal with.

I feel OK in myself (barring the inevitable aches that come with the years) so was surprised to realise that I had a flare. The symptoms I would have expected would be a return to some of the original ones - eye problems, sore temples, jaw claudication... but apparently the symptoms can show up in other parts of the body which may not be so noticeable.

I just thought this might be useful for others, as my understanding of a flare was obviously a bit limited.

[DorsetLady PMRGCAuk volunteer]

As you say disappointing- but better safe than sorry. See what he says in 4 weeks, when you should be 20mg… hopefully issue resolved. And maybe slower tapering from there on.

[Gladys911 in reply to DorsetLady]

Yes - I'm not too disappointed, I know people with worse problems. I just feel glad the GCA was caught in time and I have been lucky enough to feel supported by both my hospital and GP practice. I guess the taper is always an individual thing, but I did think I was doing really well!

[DorsetLady PMRGCAuk volunteer in reply to Gladys911]

I think most would say, to get from 60mg to 2mg is less than 12months was a tad optimistic.. 😊

[Gladys911 in reply to DorsetLady]

Survived two cancers and now have this - have to be optimistic ...!

[DorsetLady PMRGCAuk volunteer in reply to Gladys911]

Optimistic yes, perhaps I should have said ‘unrealistic’. You may one that bucks the trend- hope so, but don’t put unnecessary pressure on yourself.

[Grammy80]

Love your acceptance of the roller coaster ride. I'm glad you are feeling 'chirpy' but happier he did the bloodwork and you avoided and visual involvement. As DorsetLady said...maybe slower? The tortoise wins this race...💞

[Shiv14]

I always had very shy veins until someone I know that works in the blood bank advised me to drink plenty of fluids and keep as warm as possible. I now layer up and wear gloves (even in summer) when I need to give blood. I am usually roasting going in but it works a treat.

[Gladys911 in reply to Shiv14]

Good tip! I have only recently realised about drinking plenty of fluids and it did help. I will try the layering up.